Thanusree, 27 years old from Chennai has lived with a Juvenile Lupus diagnosis since 2010. She shares her experience of the challenges of getting a diagnosis and managing the emotional ups and downs of SLE.
Symptoms and Diagnosis
In 2010, during my 10th grade when I was 14, I had a blood clot and was advised a blood test which we took lightly and did after 2 weeks. However the day after the blood test, the lab called me and told my parents that I need to be admitted immediately in the ICU as platelet counts were very low (only 15000) and it was a serious condition. We took an appointment in local multi-specialty hospital
There was no other symptom and I was very active, which surprised the doctors who asked me if I had any fainting episode but I had had none. They infused me with platelets to prevent any blood clots from developing in the brain. Was admitted for 1 week, and thought all was normal with platelets increased to 2.5 lakh (250,000). However within 25 days, the platelets again dropped to 30000. Was prescribed Steroids for 11 years and was advised to stop these during my periods, but the flow was heavy due to low platelet which then also affected my other vitals in my blood leading to low hemoglobin for example.
Was advised splenectomy which I refused to undergo since it gave me only 20% assurance of cure. I continued with steroids. Had a lot of swelling. We went to all doctors and hospitals and Hematologist in Chennai and no one suggested it could be Lupus.
Got a lot of side effects, mainly mood swings with medication, reduced immunity and got infection very easily even from family members
Then one day I had so much inflammation that I almost got paralysed for 5 days and couldn’t move out of bed. There was very bad pain in the lower body and I got my periods. No Paracetamol helped and I cried due to pain. Finally one doctor suggested that I go to CMC which was good for Hematology. I consulted a Hematologist who suggested that it could be a bone marrow issue or SLE. Bone marrow test results were ok. Hence was advised ANA which confirmed SLE and I was then diagnosed with SLE thrombocytopenia, where my platelets were reducing due to SLE. So it was only then I understood that my bad immunity was killing my platelets and my spleen was removing my dead platelets. I realised I was in wrong treatment for 7years and even the medical professionals in India lack awareness on Lupus.
Other Symptoms
I had purpura spots on my face and body and developed these when my platelets went below 15000, also had big blood clots in my gums and mouth and felt very tired with a lot of fatigue. Hemoglobin went to as low as 4, feel very tired, didn’t feel hungry and had tightness in my abdomen, inflammation below my knees. At times very bad headache that lasted for more than 20 days and also breathlessness. Steroids also led to a lot of weight gain. Also when I stop having steroids 1 week before my periods, had very heavy flow during periods because of thrombocytopenia, this leads to me losing other vitals too and I always felt very tired easily.
I still get infection very easily, a small cold is easily caught from malls, cinemas and even if my family gets it I catch it very easily. Have to wear a mask wherever I go. Cold and cough or even fever last for 1-1.5 months and take long to recover due to immune suppressants I am taking. There were also times when my platelets dropped to 6000 due to Lupus. Glad that I still survived those days. When I got Covid it took me almost 3 months to recover.
Treatment
Before my diagnosis, I was treated with steroids for over 7 years.
After a confirmed diagnosis of SLE thrombocytopenia, I was advised to consult a Rheumatologist and was given Steroids Deflazacort 60mg for another 4.5 years along with a host of medications which I am taking now.
Now am on immunosuppressants, HCQ, Aspirin and other medications. I would also take a lot of vitamin supplements.
For any dental issues, I need to take a referral letter from my consultant as I have to stop my Aspirin as it is a blood thinner. Having Aspirin is leading to long menstrual cycle that I even bleed for 25 days a month.
After I was diagnosed with OCD, I went through therapy with a psychiatrist. I started realizing something was wrong when small things or actions triggered my anxiety, my mind wanted to repeat the things multiple times, to the extent I imagined I was a cruel person and got into a panic attack due to this during my college days. I had counselling sessions with my psychiatrist for 1.5 hours and was on medication as well. She helped me understand my condition and I started working on that. It was a very slow process. I was able to stop the tablets after I started feeling better.
I felt low when I saw people so active while I had no energy. Then I started accepting my body as it is and being kind to myself, The journey was not easy and took me so many years to get to where I am today.
Consequences of Lupus
Initially my family was also not aware what was wrong with me and had to depend on what the doctors said. At school no one understood my condition. After being admitted to hospital the first time, I fell sick very frequently due to low immunity possibly due to steroids and had to take a lot of leave. My parents had to come and explain that I am unwell. Once I fell sick 10 days before my board exam and wasn’t sure if I would be able to write my exams at all.
I also couldn’t sit and study for a long time, even attending coaching classes was very difficult. Even now due to low immunity, I avoid going to any big functions, crowded places or social gatherings even in college. Even if I do, I always wear a mask. I can be never sure about my plans and cannot give commitment to people to avoid any disappointment.
I got a lot of criticism and body shaming due to my weight gain from my relatives, since my face would look puffy and I was always uncomfortable for any physical activity I can’t even walk for 30mins a day as my muscles were very weak and very easily I lose stiffness.
I didn’t have the maturity to handle my situation, had a lot of mood swings and would be rude to my relatives. when they spoke about my weight gain.
My support
My Mom , Dad, sister, my close friends Dilli & Shalini and few other close friends gave me a lot of emotional support But eventually it was up to me how I handled this, they always advised me not to exert myself and not to get upset with any body-shaming comments. I also realised that it is not about receiving support, but that I have to decide how to handle this.
Emotional and Psychological impact
Initial embarrassment
I couldn’t handle this condition of mine well when I was 14. I felt very embarrassed when my parents come to school seeking for leave on my behalf, especially because my friends were very healthy and active. I did not want my friends to know I am sick. I got palpitations and used to feel very tired because of my medicines – couldn’t explain this to my friends. I also did not want to explain to my friends the blood clots in my mouth. It was also embarrassing as my mouth used to stink due to the clots. I was a very naughty kid and did not want to acknowledge my pain anywhere. For almost 2-3 years I was struggling with this feeling. As I was just in the 11th/12th grade, I did not have the maturity to socially manage my weakness and sickness.
Lupus and my condition led to me making no commitments and this also affected my relationships, they thought I was ignoring them and only those close to me understood. So was very choosy with whom I went out with, those who understand me. I only hang out with my family and my close friends , where I can be myself. Even today sometimes I feel shy to say NO to my colleagues when they plan for a team dinner and if I couldn’t make it up due to my health condition. When I go out I always apply layer of sunscreen before I step out from my car. I always carry a scarf along to wrap my face and other exposed places to protect myself from sunlight. I feel embarrassing when people enjoy beach and I wrap my head with scarf even in beach or any other places to avoid sun exposure. Even indoor I wear sunscreen to protect myself from UV exposure I get from Laptop light and phone light. It’s really hard to always be cautious and now I got used to it.
I decided I need to speak up.
My family and I were not aware of the disease and I suffered due to the wrong treatment. I decided to speak up openly as I didn’t want anyone else to suffer like this. I started writing and talking about my condition on social media. It was a decision triggered both by external factors – criticism from relatives and also my own thought process of why shouldn’t I speak up and help someone else.
My parents initially believed that no one outside should know about this as I may not get a proper groom in future as every Indian parent thought. Later they understood the importance to speak out about this disease and started supporting me in this journey now. I believed that I should not hide and let my husband to know everything in advance. Bottling all this was a huge burden to me.
Sharing publicly
During Covid, on Lupus day I wrote a blog and shared my story in Lupus Chennai group and – got to know the Karnataka lead and the Lupus Trust Founder. Did not find any similar group in Chennai, so decided to contribute here and support the younger generation. I want to end the suffering we went through
When I started writing blogs, I got a lot of support on what I wrote and in fact many who were not aware asked me questions about Lupus. I googled, started reading a lot of blogs, talking to cancer patients. Then in 2 years I realized that this is the case not only with Lupus but with every illness – be it mental illness, autoimmune disorders, cancer, rheumatoid arthritis, all of them undergo a lot of pain and I thought I could help them.
I developed lot of hobbies to keep myself busy. I love and do a lot of baking and cooking as it keeps me diverted.
Key message to other young people with Lupus:
No one has control over any auto immune disease which is so unpredictable. This journey is a mixture of everything – uncertainty is very common in autoimmune disease. It is not under our control and therefore nothing to be embarrassed about. Learn to accept and handle - your body, medication or side effects. I like the term Lupus Warrior instead of Lupus patient.
I do not want Lupus to define who I am. It will take some time to get used to this disease but trust me, this pain is going to make us stronger every day. We should not feel guilty about not being productive because uncertainties are very common in Lupus.
My Worst experience was when I got paralysed with my periods and never cried like that in my whole life it thought me a lot of life-lesson. Also, during my bone marrow test.
Best Experience is the feeling that I have become a stronger person not physically but mentally with Lupus. If Lupus did not hit me I don’t know if I would have been this strong as a person. I’m always thankful to my family and my close friends Dilli and Shalini and few others for always holding my back in this journey.
This is part of a series on Juvenile Lupus in collaboration with Lupus Trust India
As told to Lata Chopra
